Many of you might be aware of the new NHS England Inherited White Matter Disorder (IWMD) Patient Registry that is being developed. We need your feedback about how you would like to give consent for your registry data to be shared.
How would you like to give consent for the Registry to share your data in new research? Would you prefer to give consent once for your data to be used in all research or give consent each time there is a request from a research organisation to use your data?
Please take a minute to complete our poll on Leukodystrophy Support and let us know, your feedback is important in shaping how the registry will work. For any questions or further information, please contact suzanne@alextlc.org
I have 3 sons who have just been diagnosed with ALD
I hate to ask but i need to know…how long after the disease sets in do male children have before they lose the battle with this disease?